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WORDz for the WEEK
239. If we aren't here for a reason, then why are we still here?
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Link Between Surgery & Fibromyalgia
Can you guess which type of surgery has been linked to the onset of fibromyalgia pain? If you said gynocological -- ding, ding, ding -- you're right! We explore this new link in the chain that connects FMS with women's hormones, below.Also this week, a look at different groups of us -- women, men, kids & teens -- plus different roles we play and how to keep playing them in spite of our illness(es).
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
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PIP Chances Halved If You Live In Wrong Place Plus Coroner Confirms ESA Decision Caused Death
Living in the wrong place can halve your chances of being awarded PIP, Benefits and Work can reveal. And, for the first time, a coroner has ruled that being wrongly found fit for work caused a claimant’s death.
PIP POSTCODE LOTTERY
DWP statistics show that award rates for the whole period since PIP was introduced vary hugely depending on which Westminster constituency you live in.
Claimants living in Scarborough, for example, have just a 27% chance of getting a PIP award. Move 60 miles south to Scunthorpe and your chances leap to 59%.
We’ve got a downloadable list of the award rates in every Westminster constituency, plus some text you might want to use in your PIP appeal if you’ve been refused an award in one of the rotten boroughs.
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7 Best Foods to Eat for Breakfast
Meanwhile fast-food chains are actively trying to increase their share in the breakfast market with cleverly promoted but unhealthy breakfast options.
Skipping breakfast or making poor food choices cause crashes in energy, reduced mental performance, low mood and slow down metabolism leading to weight gain. Choosing the wrong foods for breakfast can drastically impact how you feel mentally, physically and even emotionally for the rest of the day.
When you wake in the morning your blood sugar levels are low and this leads to a lethargic feeling, mental confusion and irritability. We reach for quick fixes such as caffeine to feel more alert and sugary foods to sweeten our mood. Many people skip breakfast altogether, because they are running late or think it will help them lose weight. A reduced appetite first thing in the morning also causes many people to incorrectly believe their body doesn’t need any food. However, studies have shown that missing this key meal actually leads to increased eating during the day, poorer food choices later on and increased likelihood of weight gain and obesity.
What makes a good breakfast? Read on . . . .
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This week’s fibromyalgia and ME/CFS news (week of September 21, 2015)
“New draft guidelines by the [U.S.] Centers for Disease Control and Prevention (CDC) would – if adopted – sharply reduce the prescribing of opioids for both chronic and acute pain in the U.S.,” reports Pain News Network. (This story may be alarming for anyone who takes opioids for pain.)
Hemispherx Biopharma is now offering a Patient Assistance Program for the open-label AMP-511 study of Ampligen® in ME/CFS patients. The company recently announced Ampligen’s first cost increase in 17 years. The Patient Assistance Program will enable patients in the open-label study to continue to receive the drug through March 2016 at the same cost as when they entered the study. Hemispherx also recently published a study on which patients might be more responsive to Ampligen therapy.
A federal judge in California has transferred three lawsuits involving 69 patients who are suing Eli Lilly & Co. over Cymbalta’s withdrawal symptoms to Indiana, where the company is based.
Healthline.com has chosen its “Best Fibromyalgia iPhone and Android Apps of the Year.” http://www.healthline.com/health/fibromyalgia/top-iphone-android-apps?akamai-feo=off#2
This week on HealthRising.com, Dan Neuffer explores the question, “Do People Really Recover from ME/CFS and Fibromyalgia?” Recovery stories have been popping up all over the Internet the past few months. Did these people really beat fibro/ME, or did they even have it in the first place?
And more . . . .
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Part 1. Shaken…not Stirred, By Purple Law Lady a.k.a 007.
I got to Emeritus Research at 11am. The place looks like any other office…with 3 assessment rooms at the back, filled with medical equipment. It seems a little disorganised and haphazard; but I’m looking forward to being involved.
I had a meeting with a nurse practitioner and a doctor. They took a very, very long history, asking questions about almost EVERYthing to do with my medical history (including a questionnaire called the MINI, which I must say is just plain stupid!). I was required to give a urine sample (to check if I am pregnant), some blood work and an EKG. The doctor did a relatively quick physical and, of course, checked all my pressure points. All in all, with a few technical issues, it took about 2 hours.
The first part of the study is 13 weeks long. I have to come off the Lyrica that I am already on. Then I will be (randomly) assigned to one of 4 groups: Placebo, 300mg Lyrica, 15mg Mirogabalin or 30mg Miroglabin. There will be regular check-ups for the entire time.
After the 13 week trial, there may be an opportunity to enter the 52 week Miroglabin trial.
So, now, I’m waiting two weeks to see if I’m part of the study.
NOTE: Emeritus Research is still recruiting for the study, if anybody is interested. Click for the Consent Form and information. Contact Daiichi using this email address – SM_DS5565_FM_Info@incresearch.com
As well as the 1000 person study in the US and Canada, Daiichi is also recruiting in:
Campse and Coffs Harbour, NSW, Australia;
Maroochydore, Sherwood and Southport, Queensland, Australia;
Hobart, Tasmania, Australia;
Malvern East, Victoria, Australia;
Tallin and Tartu, Estonia;
Baldone, Jekabpils, Liepaja, Ogre and Riga, Latvia;
Auckland, Hamilton, Nelson, Tauranga and Wellington, New Zealand;
Banska Bystrica, Bratislava and Dubnica Nad Vahom, Slovakia; and,
Reading, Berkshire; Chesterfield, Derbyshire; Wellingborough, Northamptonshire: Atherstone, Warwickshire; and
Belfast, United Kingdom.
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Part 2. Dr No (or Not Yet)
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Monday Mindfulness – Week 9
Continuing to be mindful with Ian Peric of Priceless Vitality.
See you next week.
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Fibromyalgia means widespread pain in the muscles, but this syndrome causes many other symptoms.1 Lab tests seldom validate your condition and the results often make you feel like a hypochondriac. Pressing on tender points can diagnose fibromyalgia, but the exam still does not explain all of your symptoms.
2 People with fibromyalgia often describe their symptoms as a flu-like infection that doesn’t go away. It leaves you exhausted and unable to think or find the right words (symptoms of fibro fog).
3 With fibromyalgia, you have trouble sleeping and wake up stiff and achy.
4 Your symptoms can be debilitating and you probably feel as though you have to push yourself to get anything done.
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2015 Euro Health online questionnaire
“To compare the extent to which the national healthcare systems of Europe take the patient and the consumer into consideration in 2015 - including ENGLAND, NORTHERN IRELAND AND WALES"
For the 9th time since 2005, Health Consumer Powerhouse (HCP) is asking health campaigners across Europe to help it compile the annual EURO HEALTH CONSUMER INDEX. The 2015 INDEX will measure the user-friendliness of national healthcare systems across 35 countries in Europe.
If you would like to contribute your views on the condition of your country’s healthcare system in 2015, you will find a live link in the header above to the survey’s online questionnaire. This year’s questionnaire is short (16 questions), and should take no more than about 10 minutes of your time to complete.
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Spinning Fibromyalgia: Brain Findings Suggest Dopamine May Be Key
Although the interpretation may leave something to be desired the finding was fascinating and potentially important for FM patients and possibly people with ME/CFS as well.
Clin J Pain. 2015 Sep 3. [Epub ahead of print] Basal Ganglia Perfusion in Fibromyalgia is Related to Pain Disability and Disease Impact – An Arterial Spin Labeling Study. Shokouhi M1, Davis KD, Moulin DE, Morley-Forster P, Nielson WR, Bureau Y, St Lawrence K.
The Canadian researchers wanted to know if reduced brain blood flows in FM were associated with a range of symptoms. Those symptoms included pain (visual analogue score (VAS), pain disability (Pain Disability Index – PDI), overall impact (Fibromyalgia Impact Questionnaire – FIQ), catastrophic thinking (Pain Catastrophizing Scale (PCS) and anxiety and depression (Hospital Anxiety and Depression Scale – HADS).
A similar basal ganglia dysfunction appears to occur in FM and ME/CFS. Attempts to explain it differ dramatically.
The study found that reduced blood flows to one part of the brain – the basal ganglia – were highly correlated with measures of disability due to pain and the overall impact of FM (FIQ). (Note that the indices of catastrophic thinking and mood were not relevant.)
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Do People Really Recover From ME/CFS and/or Fibromyalgia? An Inquiry - Dan Neuffer
There is much information out there on how to diagnose Fibromyalgia Syndrome (FMS) or Chronic Fatigue Syndrome (CFS) (also described as Myalgic Encephalomyelitis or ME). And whilst a diagnosis can be elusive for many people suffering with this illness, there is certainly no doubt that they are very ill, even if their doctors, family or friends don’t always share this certainty.
But there is little talk about recovery; how to identify if you have fully recovered from Fibromyalgia or ME/CFS. Why? Possibly because many people including doctors may believe that recovery isn’t possible – or at least not for them or for their patients. After my 4th year of trying to get well again, I certainly myself came to that conclusion and had given up hope.
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Did you know that rosemary has been associated with memory enhancement since ancient times? It is true – and it has even been referred to from the latter part of the Elizabethan Era to the Early Romantic period as the herb of remembrance. In Shakespeare’s Hamlet, Ophelia says, “There’s rosemary, that’s for remembrance.” (Hamlet, iv. 5.) It has also long been used as a symbol for remembrance during weddings, war commemorations and funerals in Europe and Australia. [1] Mourners in old times would wear it as a buttonhole, burn it as incense or throw it into graves as a symbol of remembrance for the dead.
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Is A Vitamin Or Mineral Deficiency Making You Tired?
You already know a lack of iron can drag you down.
But experts say numerous vitamin and mineral deficiencies can contribute to fatigue. If left unchecked, the same deficiencies that make it hard to keep your head up can lead to long-term health consequences – from brittle bones to impaired brain function.
"Fatigue can be like an early warning sign of potentially more severe problems down the road if you don't recognize and treat the problem causing the fatigue," says Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School and a senior physician at Brigham and Women's Hospital in Boston. "You need to explore all possible explanations for your fatigue." That goes for ongoing feelings of exhaustion to concerns about muscle fatigue being more pronounced or prolonged than might be expected from physical activity.
Some of the most common causes of fatigue – and easiest things to test for – involve deficiencies in three minerals and two vitamins, Komaroff says. After iron comes lack of magnesium, potassium, vitamin B12 and folic acid. "All of them can be corrected by giving supplements of the missing minerals or the missing vitamins," he says, or through dietary changes.
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Chiropractic adjustment
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I've taken to knitting and crocheting poppies which will be sold in aid of AgeUK and the British Legion.
I'm taking a break from the bottle hats - I've done 820 of those - not quite the 1000 I had hoped to do, but good enough!
After November I will have to think of a new project. Maybe I could crochet some purple butterflies!!! Must hunt out some patterns.
Look after yourselves
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Contact: fmsstella@gmail.com
or leave your comments below under Post a Comment
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N.B. The links on this my FMS eNews blog are in the BROWN text, usually in the title of each article but occasionally elsewhere too. Some titles have no links in which case the title is in PURPLE like the dividers. This blog gives just a taster of each article which can be viewed in full through its link. If you have any navigation problems, let me know.
I would like to point out to you that the information in my FMS eNews blog is passed on to you mainly from other sources. Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. Sites I refer you to are for information only. They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will. Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.
I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.
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